Time to Adjust…

I haven’t written anything in a long time, since starting this blog, and to be honest, I didn’t really know where to go or where to even start. It comes down to having a ‘bad week’ for several consecutive weeks now, and I think now it’s been over a month.

In that time, I’ve had exams, since I’m studying full-time, and it’s really felt overwhelming. I kept telling myself I’d get back into writing as soon as I felt ‘better’, but now I’m coming to terms with the fact that things might not get better, and I might as well just get on with it. I do still have relatively good days, but I seem to pay for it dearly with a kind of recovery-hangover. It’s lame, and it’s frustrating, and at times things seem hopeless, and I find myself questioning ‘what’s the point?’.

A couple of weeks ago I was a bridesmaid at my best friend’s wedding. It was amazing, and I’ve never seen a more chilled out bride in my life, especially considering the stress she was under. I just took it as a given that I’d have to just take painkillers and forget about how I looked or felt, because it wasn’t my day and I was there to support her and share in such a special time. I chilled out myself, took painkillers as I needed to, and sat down when I could, but it was a long, long day. Looking at photos of myself, all I see is a chubby, frumpy lady that I don’t know, so far removed from how I feel. Inside, I felt like I was just doing okay, maybe even better at some points, although it was hard, but outwardly I looked annoyed, lost in thought, and unhappy. I wanted to be there, so bad, but there’s a constant stream of ‘If I do this, how much time will I need to spend in bed tomorrow? I’ll swap this out for that, and then hopefully I can do this now – I’ll just have to do that later’ running through my head. There’s always a tradeoff, and I’m always bargaining with consequences.

It’s so difficult to explain to people (those closest included – my fiancé had to tell my dad I couldn’t dance with him at the reception because my back was spasming before he relented) that I’m trying my absolute hardest, and that when I’m laughing and I’m made up, and dressed up, and living life to the fullest, I’m managing everything on a knife edge. How do you say; ‘that was a great hike we did the other day for 3 hours, but the next day I couldn’t walk! Haha!’ to a new friend, when you look fine, you can walk fine, you’re pushing on more than other able people, and you’re the life of the party? How do you say; ‘oh yeah, I have a connective tissue disorder where I have to bring heavy painkillers and a whole first aid kit of random stuff with me everywhere I go, because I never know what’s going to hit each day’, to someone you’ve just met, when they say ‘wow you’re so organised! Why did you bring so much stuff?’? How can you make people understand without feeling guilty or uncomfortable that when you see them, and you’re the one being the most carefree or indulgent, that this is your one day of the month to be normal and have fun? That you’ve been saving up your energy, your effort, money, makeup, clothes, by not doing anything or going anywhere for the week beforehand, and doing the bare minimum that morning so that you have the energy to spare to be a fun friend?

I know it’s silly to feel like I have to hide being sick and pretend I’m ‘normal’, but I somehow feel embarrassed, and get flustered when I’m put on the spot, so I sound like I’m making things up or being a hypochondriac. Most of the time, people just nod blankly and change the subject, but you can tell they don’t get it and can’t really be bothered asking (or perhaps don’t want to pry) or think I’m a bit strange. It’s not that I look down on anyone else with the same issues – I’m in awe of how most people handle things, and I’m trying to get myself to that point – but I feel like such a loser most of the time. Before I knew what was wrong, people would talk behind my back, or even call me out when I was ‘being weird’, and what could I say? I didn’t even know anything was wrong. I thought I was just being weak. So I would force myself to keep going, to keep doing better, to stop complaining, to go above and beyond and impress those people…and then I would crash. Hard. For weeks at a time. And I still do this! As soon as I have a ‘good day’, I think; ‘what was all the fuss about? I was just being lazy!’ And run around overdoing it – cooking, cleaning, exercising, studying…and then I have the ‘hangover’ from all my ‘efficiency’.

I’ve been coming to terms with the fact that I can and need to be upfront and frank when people ask me about things, and make it easy for them to ask me or talk about everything. To be able to say ‘no’ firmly, and explain why I can’t participate in things sometimes, and not feel somehow guilty or like I’m making flimsy excuses. I’ve always been ambitious and competitive, and it frustrates me to the max to find out I simply can’t do things sometimes, despite my best efforts to counteract. I’ve really been at a loss, waiting for a ‘good day’ to come, which just hasn’t, lately.

So since my last post, I’ve been trying to decide what direction I want to take this blog in, but in the end, I think it’s best to be honest. Sometimes I will need to vent, sometimes I’ll be upbeat and positive and excited to share my hacks for dealing with things, but as with everything, I hope it hits home for someone and they don’t have to feel alone or overwhelmed with the amount of directions they’re being pulled in, in terms of information. I know I feel that way most of the time. Maybe this can be an outlet for me as well as others, and a place to connect over similar issues.

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3 thoughts on “Time to Adjust…”

Wow! You just summed up my whole life! It’s hard to have to prove yourself to everybody you meet. I get it. I hope you get some good days back. Thank you for sharing. It’s always nice to know that there are others out there that experience the same things. Go easy on yourself ❤️

About Me

Hi!

I’m Lola, a qualified Beauty Therapist based in Australia. I have Hypermobile Ehlers-Danlos Syndrome, and aim to live the fullest life I can, while managing my health issues. I hope I can help others who are dealing with similar things!